I developed an unusual illness in 2005 involving left, non-pitting supraclavicular edema and a myriad of other signs & symptoms. At that time, I posted in various areas of the Doctor's Lounge and those posts should provide a decent history of onset. Dr. Tamer Fraud and Theresa Jones thought my symptoms possibly indicated IBC (I did too because of breast pain/swelling). Well, it's now two and a half years later and I'm not dead, so I no longer think IBC is the correct diagnosis(?). My health care has been extremely limited since onset (mostly with primary care physicians and absent specialist evaluation) due to my lack of health insurance, numerous personal tragedies, and numerous physical upheavals (state-to-state, city-to-city moves). But now, in 2007, my quest for a diagnosis is renewed admist new signs and symptoms on top of the old. Yes, the supraclavicular edema has been chronic, began on the left but now also affects the right. My current PCP made this discovery (but I already knew). My ESR and neutrophils have periodically been elevated but return to normal. I note this all began with localized left breast, axilla pain, left arm and supra edema. Throughout, multiple lymph node groups became fluctuant. NOW I am far more educated about the human body thanks to hours and hours of research. I have recently developed an enlarged Lft Epitrochlear lymph node & multiple Lft Cubital lymph nodes of the Lft arm. They are firm but mobile and the Epitrochlear feels about 1.5 cm. I also have occupital nodes, anterior and posterior cervical nodes, and shotty supraclavicular nodes. I suspect deep inguinal nodes but can't have these verified, but there is discomfort on both sides. There is only occassional mild to moderate tenderness/pain involved. And to top all of this off, about 4 months ago the back of my knees began to swell (left more than right), then the soles of my feet (the right more than the left), then various locations on the palms of my hands. To better explain: i.e, I would notice localized discomfort and swelling near the fatty part at the base of my palm. The swelling would recede and then I would find a tiny, firm but somewhat movable nodule deep in that area. Within a week, the nodule would rapidly increase in size and then stabilize, but hurt and cause off and on swelling. I now have 2 of these nodules in my right palm, 2 in my right foot, 1 in my left foot. They don't hurt unless I poke or irritate them (the stickshift of my car/my computer mouse bother my palm, shoes bother my feet. I went to my PCP crying one day because of the pain in my foot just as the nodules and swelling began forming there). My PCP FINALLY referred me to a rheumatologist at UNC under the belief that they will be very thorough in their investigation. However, while waiting for this appointment, and about 3-4 weeks ago, I developed further discomfort and swelling next to my knee. When I layed in the fetal position, and my knees knocked each other, this area would hurt and ache. Then, in short order, yet another lump/clump of tissue formed beneath this swelling, but it is far from small (think larger than a quarter, irregularly shaped, firm/tender/bulging center, squishy/diffuse edges that seem to run deep. This lump is beside the knee bones, on the inside area, very close to the bend of the knee and seems to hurt the most in the evenings, but then, that's when I put the most pressure on it. My PCP examined this lump, felt it, and immediately sent me for an Xray (this very day). I do not have the report yet, but the technician told me that it all looked normal to her but the radiologist could get a better view. Very frustrating. So why am I posting here? I am very worried now that I have some type of sarcoma. I've read that these can be difficult to diagnose, most especially synovial cell. I've also read that synovial cell can show up as lumps and nodules in the hands, soles of feet, near joints in general. So I ask, do my symptoms possibly fit this cancer or am I worried about it for nothing? If my Xray shows nothing, but this lump is definitely there, what should come next? Any thoughts at all as to what this condition could be and why it is apparently such a puzzle? And last, what are the chances a rheumatologist could stumble upon a cancer while looking for an autoimmune disorder? Does this happen? I would SO VERY MUCH appreciate any response ..... And Theresa, if you're out there, "Hello!"

Well, plain XRAY came back normal, but there clearly is a significant lump beside my knee. It is very firm, attached and is getting larger. EVERYONE CAN FEEL IT!!!! In fact, you can almost see it now, creating a mound rising in the skin over the area. So, I've researched lumps that don't show on XRAY. Most do (cysts) from what I've learned, but if it is a soft tissue mass and the bone is not involved, it may may be invisible on XRAY. Is this correct? I've further read that this may be especially so with sarcomas, if the bone is not involved. Could anyone clear this up for me? What type of subcutaneous lumps (large/4cm+) can't be seen on plain xray? What should the next test be? I thank anyone who answers!

Me again! Sorry about the long post and lack of paragraphs! I'm now fully informed about your TOS! Sorry that I've posted in different areas as well, but please remember that I've been dealing with an undiagnosed condition for nearly 3 years, grasping at straws, and not knowing WHERE to post or to whom to direct my questions. Please forgive me.

Anyway, I offer a brief update: I saw 2 Rheumatologists (he and she) today for the first time. After the most comprehensive physical exam I've ever received, and an in-depth review of signs, symptoms and numerous nodules and lumps, Rheumatologist immediately diagnosed me with wide-spread/significant lymphadenopathy to include: epitrochlear, cubital, supraclavicular, anterior/posterior cervical, thighs, occupital, axillary and more ... Course of action: 1) massive blood work (I filled 8 large vials!); 2) an appointment with a surgeon to biopsy lymph node(s); 3) Cat scan of neck; 4) a consultation with a "Cancer Specialist" no matter what (I know she meant oncologist).

After discussions and my realization that they, too, were very concerned, and in the face of her/his fears, I assured them that even the worst news would be a great RELIEF because I would finally KNOW that it hasn't been "all in my head." FINALLY someone is helping me whether or not I'm insured. YEAH! A diagnosis is coming....

(I will post this reply one time in another area -- then no more, I promise!)

Hi Bdusk,I certainly hope and pray that you will finally have a diagnosis. I am glad to hear that you have found physician's that have so diligently evaluated you. An update on the long waited results would be most appreciated. Best wishes.Sincerely,Theresa Jones, RN

Hey Theresa! Happy to see you're still on the Doctor's Lounge! So sorry I lost contact with you for a while; long, disastrous story, which fits in well with the past 3 years! I think someone must have cursed me or performed some major Voo-Doo!!! LOL. Too, I admit, as a result of my nightmare, I was soooo depressed for a long time! Please forgive me and I hope you and yours are okay??

Anyway, I developed Iritis this week to go with everything else. Talk about painful! CT with Contrast performed yesterday and I anxiously await results! I will let EVERYONE know shortly after I do!

CT came back with nonspecific nodes throughout neck, the largest being 2 cm, on the left, and nestled next to the carotid artery at the bifurcation of the sterno-- muscle (I won't spell that right / neck muscle). I don't know if this is high or low, as I don't know where the bifurcation is!

My current PCP has been dragging his feet (I'm used to it) about getting me in for a biopsy. BUT, he finally scheduled a surgical consult in 3 weeks. I have firm lumps just about everywhere now. The one next to my knee is getting ridiculously big. Oh well. Maybe they'll figure it out one of these days ......